|Apr/May 2015 Spotlight|
Image courtesy of the Cancer Institute of America
I had been working at the main New York City library for two years, doing research for a novel. The studious atmosphere in the Rose Reading Room, the easy access to historical material, books, and documents I ordered up from the stacks as well as from other libraries around the country, were so conducive to my work that at times I fantasized taking over a corner in some hidden area of the vast building, bringing in a cot and a toaster oven to sustain me. When I first began working in the library, I had often been irritated at having to wait an hour or so for a particular book to be retrieved from the depths of its prodigious collection. Then, as time passed, the week or two wait for documents to arrive from other libraries taught me patience, and I began to appreciate the short interludes before some military history or memoir appeared, using the time to search out other documents, to ask a librarian for information, or to visit the ladies' room. To my dismay the library had rid itself of its traditional card catalogs, so that one could no longer flip through the many drawers in which cards were bunched together according to subject matter and the splendid Dewey decimal system. I had often found interesting juxtapositions there, connections I had never considered, titles and notations providing new thoughts, new imaginings, new possibilities. The computerized catalog was less congenial, subjects being arranged in what I considered a poorer system than the one I had successfully navigated in the past.
At last, after more than two years of research, I felt I had assimilated enough information, enough history, enough social detail and arcana, at least for the moment, to begin writing, and so I announced to my husband that I would no longer be spending time at the library but would be working in the small office in our apartment. "You must be relieved," he said, "not having to take the bus every morning and coming back during rush hour." He seemed glad I would be home, fully concentrated on writing, but from past experience, I wondered how long it would be before he would begin telephoning in the middle of the day to mention some domestic or social matter that needed my attention.
I set to work. My main character appeared almost effortlessly, as if speaking to me, through me, and so it went for three exhausting, exhilarating chapters. I knew that while such exhilaration feels wonderful, it cannot be trusted, and inevitably, anything that gave me such facile joy would need to be rethought and rewritten many times.
One day, while walking to the post office, I felt faint. The next day, I became faint again, and the next. "Maybe it's my heart," I thought since the moments of feeling faint were accompanied by palpitations. I went to a cardiologist and had the appropriate tests. "Your heart's fine," he said. The next day I went to my internist and had what seemed like every blood test that exists, so many that the results would not be available for two weeks.
That weekend I received a call from the West Coast. My mother, who was 96, was in the hospital. I had known she was slowly failing but was not truly prepared for the inevitable. Setting aside the moments of feeling faint, that evening I was on a plane to Los Angeles. "She's dying," the attending physician said as he led me to her bed. "It'll be a day or two."
My mother's body was visibly diminished, her skin thinned and paper white. Then she opened her eyes, saw me, and tried to sit up. "I want to eat something, little daughter," she said, in Russian. "I want yogurt."
I fed her. The next day, holding her hands, which were cold when I had always known them warm, I could feel she was at the last of her strength.
"The end of the week," I told the physician.
"I think it'll be sooner than that," he said.
"Her generation's the strongest there ever was," I insisted. "She'll give herself a few more days."
Telephoning my husband in New York, I asked him to come to Los Angeles. My husband is steadfast in moments of stress or whenever I find myself in unusual or worrisome situations. I had learned to trust he would always come through whenever I, or close friends, or relatives, were in difficulty. When problems were manageable, we tended to spare each other knowledge of them until they were solved. So I had said nothing about feeling faint and of the tests that had been done, not wishing to burden him with a problem that might not exist. Both he and I had had unfortunate first marriages; both of us remained jealous of our independence, taking for granted our ability to cope. I had not wanted to marry again, but he had cajoled me into giving it a try for a month or so, saying that, if I did not like the arrangement, the marriage could be annulled. For over 30 years we had been married on a month-to-month basis. On occasion it would occur to me that he had been extremely clever.
My mother died on Sunday morning. The funeral was on Monday. Just before the burial, a mortuary attendant opened the coffin lid and asked me to identify her, which I did, touching her icy cheek and hands before placing a few family photographs alongside her body as well as the last lemons from the ancient tree in her garden. The tree had long refused to die, each year producing a handful of fruit as if to demonstrate its determination. She was buried in the grave alongside my father. My husband recited the prayer for the dead.
After that we went back to her house, where I gathered the trust and estate documents she and I had organized years earlier when such matters had become increasingly wearing and confusing to her. Freed of responsibility for herself, she had handed me her checkbook, so that I might pay her bills, see to her taxes, and keep track of her savings, the latter of which had dwindled considerably since, over the last several years, she had needed live-in care.
In the next few days, I saw to all the legalities, and we began emptying out the trash, donating what could easily be donated to charity. That done, my husband returned to New York. From the time of my arrival in Los Angeles, through the days when my mother was actively dying, through the funeral, the legalities, I had never once felt faint.
With my husband gone, I opened my mother's long-abandoned workroom, where for decades she had earned a living sewing draperies and pillows and bedspreads for a decorator service. She had always made her own clothes: floral blouses and bright-colored dresses, a flamboyance left over from her early theater days in the old country. Perhaps it was that unending flamboyance that caused me to wear nothing but neutral colors, enlivened only by a scarf tied about my neck or shoulders in the complex French manner, or a piece or two of discreet jewelry.
I brought what remained of the workroom contents into the house: bolts of cloth, vintage Italian hat bodies in fine straw or silky felt from her days as a milliner, the many worn, wood blocking forms she had used for shaping hats, and cartons filled with old dress patterns. Friends sent me two young costume designers who came, leafed through the fabrics, hat bodies, blocking forms and patterns, and eagerly bought up what my mother had held on to for years: In her 80s she was still saying she would resume designing and sewing when she felt stronger.
I ordered her grave marker. And then I grew faint again.
Leaving most of the chores undone, I closed up the house, gave my best friend a set of keys but no explanation for my sudden departure, and flew home. There had been no time to grieve.
"Hold my calls," my internist told his staff, then took me into his office and closed the door. I had known him a long time and had never seen him so pale or so agitated. "You probably have leukemia," he said, "chronic myelogenous leukemia."
Half an hour later I was in an oncologist's office undergoing a bone-marrow biopsy. Afterwards, the oncologist explained I was feeling faint because my white blood cell count was dangerously high. He gave me a prescription for drugs that, he said, would bring the white cells under control.
"What next?" I asked.
"You start treatment."
"What are my chances?"
"I think it's CML. If it is, we have a couple of treatments available or maybe a bone marrow transplant, if we can find a donor. Do you have siblings?" I shook my head. "I have to be frank with you," he said, "there's usually not a great outcome: three, four, five years." My mind went numb.
I brought the prescriptions to a friend's pharmacy and realized I was short of cash, but he, seeing which drugs I had been prescribed, told me to forget it.
Then I went home and waited for my husband. When he arrived, it took me an hour before I was able to tell him I was ill. We spent the evening and the next few days being alternately devastated or paralyzed, my husband repeatedly asking me to tell him exactly what the oncologist had said until I could no longer answer him but merely shake my head, and at last, retreat to my office. In my disarray, I put the printed-out pages of the novel's first chapters into a manila folder, which I placed in the bottom drawer of one of my file cabinets, far back behind all my accumulated research material.
The novel I had been writing with such determination and joy, in which I had invested so much time, thought, effort, and emotion, had disappeared, no longer existing except as a faint memory of something set aside.
At the time, my husband was a department manager at the local Veterans Administration Hospital. He had graduated university with a degree in pharmacy, had run several chains of pharmacies, and as a result knew a good number of doctors in New York City. Over the next several days he made many phone calls and finally found a hematologic oncologist who appeared to be universally respected by his peers. The man's office was two blocks from our apartment.
We sat watching nervously as the new oncologist read through the laboratory results and reports from the other two doctors. "I think I'd better do a bone marrow biopsy," he said.
"I just had one."
"I'd rather do my own," he insisted.
A bone marrow biopsy is the sort of procedure doctors call "uncomfortable." I lay myself belly-down on an examining table, and a certain amount of lidocaine was injected painfully into the skin and muscle over my iliac arch. Then the doctor pushed a sharp device through the skin and muscle, drilling it into the bone until the tip reached my marrow. The device in place, he aspirated several vials of bone marrow. The sensation was one of something fundamental to my very existence being sucked out of me. The aspiration finished, the doctor chipped off a small piece of bone that was also to be biopsied. After that, I turned over on my back and lay still for a half hour, applying pressure to the wound. Having experienced two bone marrow biopsies within three weeks, I now knew that the difficulty of the experience depended on the doctor's lightness or heaviness of hand. The pain from this second biopsy lasted almost a week, and I was grateful for painkillers. In the year and a half to come, I would have seven bone marrow biopsies in that same office.
At our next appointment, the doctor told me he would be treating me with PegIntron, a slow-release form of interferon, a chemical that, he assured me, exists naturally in the body and was the latest, most effective treatment for CML. This sounded anodyne and reassuring. But the treatment could not begin until the drugs I was taking had lowered my white blood count sufficiently. We were in early October, and he estimated this would take until mid-November.
"I'm feeling a little better," I said. I had been taking the medication for two weeks and could already sense a difference since I rarely felt faint. I could feel my strength returning, and with it an instinctive desire to travel. "I'd like to go to Paris, if I can."
"To visit friends."
He thought about it for a while and then said, "If you're really feeling better, go to Paris. There shouldn't be any problem as long as you take the medication every day."
This was not the first time in our marriage my husband thought me crazy, yet he had never interfered nor stood in my way once he was convinced I was serious about what I planned to do. Over the years we had built our partnership, each of us making accommodations in order to live our life together, accommodations that would not offend our sense of ourselves or threaten our marriage. After so many years we truly knew what manner of acceptance was necessary, and what we could offer, in order to oblige each other's needs and ambitions. So it was that I had often travelled on my own, as had my husband, remaining out of touch for days or weeks and, upon returning, feeling truly content to be home again. Now, even though this particular situation was not the usual sort, he seemed to understand my desire to be elsewhere, saying merely, "Do you really think you ought to leave New York?" What he did not tell me then was that, having learned all he could about CML and the other forms of adult leukemia, he knew that if I was to be treated with interferon, which cured only a small percentage of patients, I would be betting my life on bad odds.
I went to Paris and saw friends and acquaintances who had made the city an enchantment for me when I lived there, as well as two former lovers with whom I had remained friends: one, an editor and translator, who always telephoned me on my birthday and, from time to time, would ask for my help with American locutions or social usage in the novels he was translating; the other who often sent me stories he had written and was gracefully welcoming when I reciprocated. To my mind, I was saying goodbye to them all.
On my last night there, which was the night when the Beaujolais nouveau arrives in the city and restaurants are filled with people and music plays everywhere in an annual celebration of life and wine and everything that is good, friends took me to dinner and, in the middle of the meal, one said, "You're not looking well."
"I have leukemia," I said. "This may be the last time I come to Paris." They embraced me and said affectionate things and then ordered another bottle of Muscadet and another two-dozen Belon oysters, which I love but perhaps are not a good thing to eat if your immune system may not be up to par.
The bistro's owner had hired a band to play and sing throughout the evening. The musicians were French but sang Eagles' songs in accented English, and every fourth number seemed to be "Hotel California." I sipped Muscadet and sang along with them even as the feeling of dread I had temporarily been able to ignore returned, as intense as ever.
A week after I returned home, the PegIntron treatment began. On the evening following that first injection, I rose from the bed, vomited and still standing, blacked out. The next day my husband told me he had waited for the vomiting to stop, undressed me, washed my body, changed the bed linens, and cleaned the bedroom carpet. I was mortified, not only at my thorough loss of control when my body reacted to the chemical, but that he had been forced to deal with the mess. Luckily, that first violent reaction to the drug did not occur again although, far from being anodyne, it almost immediately rendered me unable to move. In the coming months I would scarcely leave our apartment, and then only to go to the doctor's office for the weekly injection. Barely able to eat, I lost weight. I lost hair. I lost the ability to read, the most serious of my losses at that point, as books had been the center of my life since childhood. The drug's assault on my very being left no room for fear, but at the time, I would not have been able to recognize nor put a name to that emotion. My true self had disappeared, leaving me capable of nothing but the determination to endure. There were brief moments when I recognized anger in myself, and despair, with an occasional rare oasis of tentative hope. But the one, unending constant was overwhelming illness and fatigue. Since the doctor had decreed PegIntron was the newest, best treatment for CML, I found myself not only too weakened but too dependent, or perhaps too intimidated, to question his expertise.
As devastating as this was for me, it was unbearable for my husband. Each morning he would leave for work and return in the evening knowing he would find a speechless skeleton in place of his wife, a person he would have to care for, no matter his own fatigue. How he bore it, I do not know. I do know that about three months into the treatment, unable to shop or prepare meals, I managed to focus just long enough to find a cook to come in twice a week. As she had recently begun training to become a chef, her fee was minimal. She proved to be a fair enough cook, although not in a style we were used to. My husband said nothing, but I could tell, from his determination to get through the meal, his posture at table, and the way he finished dinner in 15 minutes, that he was unhappy, although he never complained. His attempts to make me eat something, anything, inevitably ended in failure as, to please him, I would stagger to the table and take a few bites from the small salad plate with its scant serving of food, its size plainly meant not to be intimidating; or, if I was too weak to leave the bed, from the saucer he would bring to the bedroom, knowing I would almost always turn away. I have no memory of what I did manage to eat all that year. I do know that at the end, I had lost so much weight that the one pair of French-made suede jeans I kept packed away, a souvenir of my long-ago life in Paris, fit me again.
The weeks cycled by: injection on Monday, nausea and annihilating weakness through Saturday, Sunday in something like recuperation, and then Monday again.
Stubborn in his belief that fresh air was a necessity, my husband insisted on walking me around the block every Sunday so I could breathe something other than the atmosphere of the sickroom. He would take my arm, and we would move very slowly, each step an effort until, inevitably, I would say, "I'm going to faint. Don't try to pick me up." And I would fall, most often on a side street, remaining on the ground until my mind cleared. Habit having drained him of embarrassment, my husband would stand over me and wait until I raised my arm so he could help me up, after which we would return to our apartment and I would go back to bed until our next outing.
The day came when I was convinced I was being poisoned, and that the interferon was quite possibly killing me. One afternoon, alone, my husband at work, I somehow managed to take a taxi the two blocks to the doctor's office and staggered toward it, holding on to the wall that led to his door. An EKG showed no indication my heart had been damaged by the medication, and so I was sent home without a word to acknowledge I felt in danger from the drug and barely alive. That was the only time I cried.
A year went by, the bone marrow biopsies showed the leukemia had not improved, and so one day the doctor decided to stop the treatment. Within two weeks I began to feel better, but the next step, he told me, was to try an older, more primitive combination of chemicals that in the past had worked on a small percentage of patients.
Determined to enjoy the respite, I asked him to wait until after the New Year.
The next week my husband learned a second-stage trial of a promising new leukemia drug was being offered. He made inquiries and was bluntly told that, given my situation, I had nothing to lose. To our consternation, my oncologist had not mentioned the new drug to me, nor that he was supervising a portion of the trial, even though I was a perfect subject, the trial having been designed specifically for those whose treatment with interferon had been a failure.
Through colleagues, my husband had me volunteer for the trial, and I was accepted. A few days later I was informed that the cohort in which I had been enrolled was already complete and so I would not receive the drug. In despair, knowing I would refuse the more primitive chemical treatment I had been offered, I turned numb again, unwilling to accept I was going to die even before I actually reached that stage. Unknown to me, my husband spoke to my doctor. I do not know what was said, but the result of that conversation was that the doctor immediately pressed my case with the pharmaceutical company while my husband telephoned everyone he knew who might help overturn their decision. Whatever arguments they used, a few days later I was reintegrated into the cohort from which I had been expelled. It was my husband's determination that saved my life.
In February, I began taking the drug, then called STI-571, which underlined its experimental nature. The side-effects were immediate: nausea from the drug itself, which was corrosive to the esophagus, excruciating cramps in my legs, feet, and hands that came in the night and brought me awake, crying out; periorbital edema causing the flesh around my eyes to swell until my face looked like a frog's; the melanin leaching out of my skin until I resembled a wraith; occasional bleeding in the whites of my eyes; and then, very soon, weight gain around my midsection that distorted my body into something I did not recognize. The doctor informed me these side effects were usual. I would have to bear them or, if they proved too difficult, simply give up despite the hope the drug would work for me. Treating the nausea and pain in my esophagus with what my husband called a "PPI," and I being too ill to even want a translation, rendered the other problems somewhat easier to tolerate. My husband's suggestion that the nausea and burning sensation might be alleviated in this way had taken a while to be approved.
Of all the side effects, one of the worst was being awakened several times during the night by ferocious leg and hand cramps. Remembering what I'd done in my teenage years to reduce menstrual cramps, I began taking calcium, which proved helpful for a short time. My husband came up with a new medicine designed to treat leg cramps and bad circulation. Although unfamiliar with that particular drug, the doctor wrote the prescription. It worked for me. Slowly, the side effects began to abate, although they never completely disappeared: My face and body would be forever changed.
I stopped looking in the mirror.
In anticipation of the quarterly bone marrow biopsies demanded by the trial, I searched out and found a hypnotist who was attached to the Sloan-Kettering Cancer Center and came highly recommended. Years earlier, facing serious surgery, a hypnotist had taught me a method for controlling post-operative pain. Her guidance had served me well, especially since that hospital's nursing staff proved to be both curious and cooperative. Unfortunately, she had died, and so in attempting to retrieve the discipline, I was forced to teach the new hypnotist the vocabulary and images I had used so successfully in the past. Even though he obviously felt awkward about a few of the techniques, he appeared willing to try, and so, with each of us guiding the other, I managed to reach, and sustain, something near the deep concentration I had known before. In late April, I informed the doctor, who was still performing the bone marrow biopsies, what I needed in order to retain that state. In early May, I lay down on the table and took myself away from the moment. The doctor came into the examining room and loudly said, "So she's hypnotized or what?" My focus was destroyed. Sitting up, I ordered him to leave the room. His nurse, who had cooperatively remained silent as I concentrated on the smallest details in the bare landscape of the Mojave Desert, was appalled. Whether it was at his behavior or mine, I do not know. In a panic, she said, "Doctor has another patient after you."
"He can come back after he's seen that patient, but tell him not to say a word. He's blasted my concentration to hell, and I'll have to try to get it back." A half hour later the doctor returned, but I had not been able to regain the depth of focus needed and could hear the instruments clinking as they were picked up and laid down again, could feel the burn of the lidocaine as it was injected, the pressure of the trocar and cannula and the aspiration that followed.
The results of the biopsy showed there was some improvement. By August, after another biopsy, there was scant sign of the leukemia. I was not cured, but the expression of the disease had been blocked, and it now became a matter of waiting to see how long this would last. I suppose the lack of certainty might have caused me to live tentatively, or to worry the disease would outwit the medication and cause a relapse. But, without consciously deciding to do so, I simply ignored those possibilities, living as if this reprieve would continue and that the leukemia would remain at bay, becoming merely a situation to be managed.
My husband was hugely relieved: evidently the months of waiting for me to live or die had worn him down more than I had been able to recognize. Now, I watched as he began to feel our lives were returning to normal. I watched his anxiety lessen, watched as he became less centered on my illness, but I could also sense his wariness, his fear the leukemia might reappear and there would be no other miracle available. Still, he very soon became the man to whom I had been married for so many years, no longer careful in our exchanges, once again giving free rein to his normal moments of grouchiness or teasing, again recounting his workday and the situations in which he found himself, or the doings of the people around him. And we were beginning to have our conversations again, one of the things we had both lost during the time of leukemia.
We were living a semblance of normality, but I was aware the person I had been, before becoming ill, was not back. I suppose my husband knew it, too, yet neither of us spoke of it. We merely carried on, waiting for me to return to normal.
Having been in bed for almost a year and a half, I had lost muscle mass and stamina. Slowly, I began to move around the apartment. Slowly, I began to put order into our household, which had become chaotic while I was ill. My brain was still not functioning normally, although I was aware of what needed doing, and could do it. One morning, I absent-mindedly picked up a book on the history of New York City in the late 19th century, and opening it, discovered I could read again, which was an enormous gift as I had thought my mind had gone forever. The cook was back at school, and I was preparing simple meals from the groceries my husband brought in, although the effort of cooking usually exhausted me.
I have never liked exercise, have always avoided gyms, hating the promiscuity and other people's sweat, abhorring the jargon. I do not like wearing shorts and a t-shirt in front of others, although in earlier years I had happily worn a bikini. I do not like being one of a crowd hopping around or grunting or running to nowhere. Yet it was obvious I needed to regain my former energy and strength, if I could.
Photograph courtesy of Edward Hasicka
There was a building nearby I had often passed without paying it any particular attention, only vaguely aware its second floor held a dance studio. I had never danced, not even as a teenager nor socially as an adult, perhaps scared off by my brief experience of ballet class, at the age of six, that had immediately left me with ankles aching so badly I was unable to climb stairs. For me, dancing had always been something nice enough to watch but nothing I would ever choose to do. Yet one day I entered the building, and relieved there was an elevator, rode up one floor. Inside the bare, mirrored studio, three couples were practicing ballroom dancing. To my unaccustomed eye, their movements appeared strenuous. After a while, the studio manager asked if I was interested in lessons, and I said I might be but I had been ill, had never danced in my life, and was so out of shape I could barely walk.
"No problem," he said. "Whoever's teaching you can stop when you have to, and you can sit down until you're ready to go again." Then he quoted prices.
Along with her house, my mother had left me what remained of her savings. To my surprise, I found myself signing up for a month's worth of dance instruction, renewable at the same rate. "What do you think?" I asked my husband.
"Whatever you want," he said. In all our years together, he had never objected when I attempted something out of the ordinary except, on occasion, to say, "Are you sure you need to do that?"
The next Tuesday I met my instructor, a pale blond, lanky Bulgarian, formerly that nation's national ballroom champion, who, like many other Central European ballroom dancers, had made New York his new home. I explained my situation. "We know about it," he said. "Is no problem." And he put one arm around my waist, held my right arm out to the side, and said, "Right leg, step back. Left leg, step back. Right leg, step right, left leg together. Then reverse, forward."
I tried to follow his instructions, and soon we were moving in a sketchy fox trot, although it was actually more like walking. Two minutes later, I had to sit down. After a while I got up, and we walked some more. The studio was filled with loud, recorded music that changed every five minutes or so, at one point a waltz, the next minutes the rumba or some other form of Latin dance. The couples on the floor continued rehearsing whichever form of dance they wished, ignoring the music until the moment it shifted to the one of their choice, so that at times a couple might be dancing salsa to the strains of a bolero, or the quick-step to the sound of a waltz. It seemed to me there was a confusing disconnect in this, but it was all so new to me it would take weeks before I came to understand how the dancers managed it.
"How was it?" my husband asked.
"We walked to music," I replied.
"Is this actually exercise?" he asked.
"No, thank God," I said.
A few days later I returned to the studio, and we walked again. Soon, Stanislav taught me a variation on the basic step, and we did that twice a week for another two weeks, pausing frequently so I could catch my breath.
In the second month he taught me the steps for the rumba and the cha-cha-cha. By now I was able to move for perhaps five minutes between pauses. A month later, we attempted the waltz, which in its Viennese version, is taxing for even the healthiest person. Through all this Stanislav was infinitely patient, and when I came to think of it later, I realized it could not have been easy for him to accommodate not only my awkwardness but the number of times I was forced to rest.
Still, in a while, I could manage about six or seven minutes of rumba or foxtrot before I had to stop, and soon after I was moving long enough to raise a sweat. This regimen lasted nearly six months until I was dancing for the full 55-minute lesson, pausing now and then for a swallow of water before starting up again. I had even become invested enough in the lessons to buy a pair of black rehearsal shoes that matched my dance costume of lightweight black sweatpants and a black top. The dance shoes made things far easier as they held my feet properly and their thin suede soles allowed me to feel the floor.
My oncologist had passed me on to one of the other doctors taking part in the study, and every three months she would perform a bone marrow biopsy. She had a light hand, yet I would still concentrate and try to take myself away, prefacing each biopsy by saying I would be timing her. Within the year, the entire biopsy, from lidocaine injection to "all done," rarely lasted longer than eight minutes, although I still needed pills for the pain afterward. And it would take a month before we received the results, which inevitably showed the leukemia was being held at bay.
One day, Stanislav was gone, having disappeared into the professional ballroom dance circuit. Feeling stronger now, I was reluctant to give up the lessons that had come to punctuate my week and had increased my stamina. When I told my husband I would have to find a new instructor, he simply nodded, having grown used to the idea that an hour, every Tuesday and Friday afternoon, was now devoted to dance lessons. Plainly, he considered those lessons a personal matter, and so he had never questioned me about them, nor about the person of the dance instructor, showing only mild interest when I first reported the man was Bulgarian, was a dance champion, and, now, that he was gone.
At that time, many New York dance studios offered a free or low-price trial lesson as a come-on to new students. I made the rounds of studios in Manhattan, dancing for a half-hour with a variety of teachers, and at last came upon a place in Chelsea where the try-out instructor was a Utah boy with a sunny disposition and Broadway ambitions. This time I said nothing about leukemia. In a few lessons he straightened out some of my more awkward movements and attacked my guarded posture, the result of all those months of illness, but I was still doing simple fox-trot/cha-cha/rumba/waltz with a daring few minutes of basic swing dancing to finish the session. My physical strength had vastly improved, but I was becoming bored since it was always the same predictable dances, the same sorts of steps performed more surely now, with less hesitation, yet I had not become enamored of dancing and was considering giving it up.
One day, looking through a window into a smaller, private dance studio, I watched a couple dancing the tango. It was not the flashy, faux-sensual performance tango seen in movies or on the stage; this was an intense, highly technical, personal dialogue of a dance. The instructor, a short, dark-haired man, noticed me watching, looked hard at me, then went back to the lesson he was giving. When it was finished, he came over to me. "I'm Rodriguez," he said. His accent was pure Brooklyn, and he had a smart-ass air about him. "You want to learn tango?"
"I don't know," I said. "I've never tried it."
"Come on, I got a half hour before my next class." He led me into the largest studio, where other couples were practicing their particular dances to the usual variety of music.
The tango stance is not like that of competitive ballroom dancing where, when entering the dance, the body is held somewhat in opposition to the partner's and the center of the torso acts as a fulcrum for the movements of the dance, all of which are highly choreographed. In salon tango, which is what Rodriguez taught, the bodies are tilted slightly forward and held fairly close, uncomfortably and inappropriately close, to my mind then, so that one may sense where the leading partner is about to move. A variety of step combinations must be learned, along with the body cues that indicate which step will be done next, and once these have been mastered, the dance should become an improvisation.
Rodriguez and I moved slowly, carefully for a while, I keeping my distance, reluctant to bring my changed, thickened and ungainly body close to his. There was something disturbing about this, not only the physical proximity, but the fact that, ideally, the partners share an improvised dialogue demanding the closest attention and receptivity. When the half hour ended, I was upset, the first time I had felt any deep emotion other than anger and despair and then relief when I realized I was not going to die. I spent the evening thinking through, and analyzing, my reaction: here was something completely alien to my life and somehow so threatening in what it might require of me, that I was truly reluctant to continue. Yet I felt attracted to its complexities, its difficulties, and what I sensed were its demands, which I had recognized even from that brief lesson.
The next day I cancelled the ballroom lessons and started to learn tango with Rodriguez.
We began with the proper way to enter into the dance, and the basic figures. I was still not moving freely, but Rodriguez taught me to take long steps backward, and when prompted, to cross my left foot over my right after the fifth beat. He led by a subtle tilt of his shoulders or weight shifts that, over time, became easier and easier to recognize. All this was performed to the demanding tango rhythm, regardless of the music being played. Soon, Rodriguez taught me ochos, forward or backward figure eights where the follower crosses in front of the leader, smoothly pivots on one foot, and then crosses again in the opposite direction. The forward ocho is fairly simple, but the backward ocho demands perfect balance. My body's center of gravity had changed, my muscle control was questionable, and I struggled to accommodate its new reality. After two weeks of doing ochos, Rodriguez showed me the molinete, in which the follower circles around the leader in a series of varied but clearly defined steps. I had been vaguely aware my short-term memory had been damaged by my illness and the drugs, but my inability to learn new steps quickly and to link them together brought that awareness into focus and caused me great frustration. I had trouble remembering the pattern of certain steps and grew increasingly anguished as I failed to immediately assimilate what Rodriguez was trying to teach me.
At every lesson I felt I was moving with all the grace of an elephant, trudging through the hour rather than dancing, and after about 20 minutes, I would find myself sweating, water pouring out of my pores as if I'd run a mile. I began bringing two towels to class along with two pints of water that I would finish before the hour was over.
One afternoon, halfway through another session of heavy treading and missed signals, Rodriguez, who early on I'd learned was far more clever than his patter might indicate, said, "So is this the first thing in your whole life you haven't been able to learn in three days?" Startled by his perception, I could not answer but merely shook my head.
I had been studying the other dancers in the studio, watching them rehearse new step combinations, new variations, new choreography for their next competitions, and I quickly became aware that, despite its reputation as a dance of seduction or of the establishment of power by one partner over the other, tango was actually a matter of technique and athleticism rather than sensuality. Often working with a dance coach, a couple rehearsed their steps and figures but also the gestures, postures, and facial expressions that, on stage or in competition, would indicate the expected eroticism. The only struggle for power I ever saw was once when two men were dancing together. Having established the basic pattern of steps they meant to perform, they began to challenge each other with variations within the established figures, breaking the agreed-upon pattern by introducing new steps or movements. It reminded me of the challenges one hears in jazz, when one musician riffs on the tonal and rhythmic patterns being played, and another musician takes up the challenge with an answering riff of his own.
I was running out of tango money. Telephoning my best friend in Los Angeles, I said, "Can you find someone to rent the house?" She said she would try, and then a few days later, called to say that not only was the house still filled with my mother's things, it was also filthy from two years of neglect and, too, the interior was sad and unattractive. "Can you find someone to move everything to storage?" I asked, "and someone to spruce up the place?"
Several days later she reported she had emptied the house and was now volunteering to redo its interior. She had been my best friend since childhood, but what she was offering was beyond friendship and something near to sainthood.
"Send me some money," she said, "and I'll probably need more before it's finished."
Putting the tango lessons on hold, I withdrew money from the savings account I had sworn never to touch except in the gravest emergency and sent it to her. A while later she reported that when the old carpeting inside the house had been pulled up, they had uncovered an intact, red oak floor. And when the ugly mantelpiece was removed, she discovered it had been hiding an Art Deco fireplace. From time to time she would report on the appearance of painters and plasterers, plumbers, tile-setters, and other craftsmen. From time to time she asked for more money. Fourteen thousand dollars later, the house was done and put up for rent. A week later she reported that I had tenants, and that she was sending me the first month's rent check along with the security deposit.
I signed up for three months' worth of tango lessons.
"Glad you're back," Rodriguez said. "Where'd you go?"
"To find money," I said.
Now there came weeks when I struggled with posture, with holding what he called "the frame," with arm and head position and smoothness of movement. Rodriguez often came to the studio by bike, riding from his home in Brooklyn, over the Brooklyn Bridge and through the Manhattan traffic. He would arrive damp with sweat from his exertions, change into his dance shoes, and immediately begin the lesson. Since I always sweated my way through a lesson, I said nothing, taking it as only fair.
Rodriguez and his wife were sharing care of their newborn son, and one day, unable to find a sitter, he brought the infant to the studio, carrying him in a sling that lay across his chest. The boy was fidgety, whimpering when Rodriguez set him down in an infant car seat. Picking the baby up again, Rodriguez replaced him in the sling across his chest, saying: "Will this bother you?"
"No problem," I said, even though I was skeptical about his parenting technique and worried we might crush the infant while we danced. For the next quarter of an hour, we danced with the baby nestled between us, our bodies adjusting to his presence, carefully keeping the exact distance to accommodate him. Strangely, this exercise in infant care taught me more about "holding the frame" than anything Rodriguez had ever been able to explain or to show me.
After this there were many times when, impatient, I presumed what the next step would be and was inevitably wrong. There were times when I hit a plateau and was convinced I would never get past it, would never improve, would never dance tango well. The constant repetition of the exact same steps and figures reminded me of the endless violin finger exercises I'd done as a child, attempting to master the techniques that would eventually, I was told, allow me to produce real music.
One day, dancing in a small private studio, there came a moment when, while doing a series of steps we had done a hundred times before, the tango dialogue was suddenly there, unexpected, unhesitating. The connection was so intense, and so delicate, I actually managed to say nothing.
Now I began hearing tango wherever I went—in advertising music, in movie scores, in jazz, in short passages within popular songs. Although puzzled and often irritated by my single-minded pursuit of the dance, my husband eventually gave me a CD, The Soul of Tango, performed by the cellist Yo-Yo Ma. Most of the pieces were classics of the tango repertoire, but in others, the tango rhythm was often bent or extended or disappeared. I brought the CD to the dance studio, and we began using it at the end of the hour's lesson: a small lagniappe, a promise of the possibilities inherent in tango when the body remembers what it is supposed to do. This music was tantalizing in what it offered, the tempo and beat of the dance being set loose, leaving even more room for improvisation.
All through those months, Rodriguez had been urging me to come to the studio's tango evenings, but I had absolutely no desire to do so. I had not undertaken all this in order to take part in social dancing or, worse, make a spectacle of myself. Some instinct had told me learning tango would not only serve to retrieve my strength, but would help me adapt to the transformation of my body. Most importantly, it would prove I was still able to gain control over something complex and foreign to me after having lost control of my life.
When it was offered, I now felt strong enough to take on a consulting job at a language institute. I had known the owner for years, the work was both interesting and demanding, and I was being paid enough to establish a balance between the money coming in and going out. After several weeks of seeing me leave the office early twice a week, the owner asked where I was going, and I told him. "Tango?" he said. "I danced tango in Vienna, when I was young." I had known him as a master teacher, had known details of his courageous and daring wartime activities, had known something of his personal life and a great deal about his business struggles, and it never would have occurred to me that this profoundly serious man had, at one time, danced tango. A few weeks later he handed me a bonus check, insisting it be used only for tango lessons.
The next year, on a visit to Los Angeles, I went to meet my tenants but actually to see what my best friend had done to the house. She had accomplished wonders, the house now so attractive that for a moment I considered that my husband and I might leave New York and live there, a notion immediately abandoned when I remembered he was a hard-core New Yorker and I had become one, too. Afterward, I went to check on my mother's things being held in storage but gave up after only an hour of opening and closing cartons: Obviously, I was not yet ready to face all that packed-up memory and grief.
A day or so later I learned friends of friends were studying tango with a Buenos Aires tanguero who came to their home to teach them. They invited me to take part in a lesson, and so I went, although with some trepidation since I had never danced with anyone except Rodriguez.
Jorge was tall, had long hair tied in a ponytail, spoke an approximation of English, and had brought his own tango music with him. When it was my turn to dance, it was immediately obvious his style of tango was different from the one I had learned from Rodriguez. And it was also apparent I had been pampered, since Jorge made no concessions, except those one makes when first dancing with a new partner.
Soon he was leading step combinations Rodriguez had not taught me, taking it for granted I knew them or would learn them easily. I did not, and then, suddenly, I was able to assimilate what he was showing me. At the time, Rodriguez had begun teaching me ganchos, those fast leg hooks that are so spectacular when done onstage. Now Jorge began leading ganchos, but I had not yet learned the body cues for the various sorts of hooks and kicks, and he had to show them to me: a pressure of thigh against knee or against thigh that demanded an immediate reaction, one leg hooking backward or forward or around the partner's leg, or between his legs and then often across one's own leg again in a sort of mirrored reflex that finishes the movement before one is led into the next variation. Too, Jorge's version of the molinete was slightly different than the one I had learned in New York, and so we walked through it slowly four or five times before I managed it almost correctly. To my surprise, it took me just five minutes of repetition to adopt his style. We then worked through an entire tango, and I found myself following him almost unerringly since the figures he was leading were neither the most complex nor the most demanding. Perhaps he, too, was pampering me.
I returned to New York, to weeks of work and tango. A year passed before my next visit to Los Angeles. Telephoning Jorge in advance, I asked for a lesson every morning of my stay there. My best friend moved all her living room furniture back against the walls and lent me the bare floor for the week. On the fifth morning, she stayed to watch, and at the end of the lesson, Jorge transformed its last few minutes into a performance, ending in a classic tango pose. I managed to follow him with no hesitation—and a tentative feeling of elation. My friend applauded; we bowed.
Following this, Jorge invited me to visit a tango club, and now, perhaps more accustomed to my new body, or far enough from home to feel safe looking ridiculous, I agreed to meet him there. My friend came along for moral support; Jorge brought his fiancée, a German geologist he was teaching to tango.
The four of us sat at a table for two and ordered soft drinks and water. There was no live orchestra, only a CD player and several speakers hanging against the walls. Most of the dancers were either beginners or had reached an intermediate level of proficiency. Jorge and I walked onto the floor, and he began leading me double-time, so that we were moving faster than anyone else: It felt as if he could not bear being surrounded by tentative, amateurish dancers.
"Slow down," I said, and he did. We danced several times during the evening, and suddenly the Yo-Yo Ma recording was being played. There were only a few couples on the floor. I asked Jorge to dance it with me.
"It is not tango rhythm," he said.
"It is, but you have to find it and improvise as it comes." He obliged me, leading with his usual authority, although I could sense he was uncomfortable with music unfamiliar to him. Perhaps it was his discomfort, or my familiarity with the tango music being played, but for the first time, I felt I was truly dancing, moving smoothly, strongly, intensely attentive, and not merely performing an exercise in technique. The sensation was so new, and so exhilarating, I did not want it to end. But of course it did, and we sat down again. Leaning over the table, Jorge said, quietly, that he liked my style in dancing tango.
It had never occurred to me I might have a style.
Back in New York, Rodriguez seemed surprised at the manner in which I followed him. I did not mention I had been dancing with another partner. It was plain he hadn't expected any changes in my dancing other than the new figures he might teach me. And so, perhaps to test me, he began showing me how to perform adornments, small steps that one or the other partner adds to the figure being danced: one foot tracing circles on the floor; a series of quick toe taps; a short caress of a foot against the partner's leg. Whenever one dancer offers such ornamentation, the other always pauses for that moment, giving the partner freedom and space to make a declaration in movement, quiet, contemplative or assertive, or as a challenging personal statement within the dialogue of the dance. After a time, I found myself daring to offer such steps, not waiting for Rodriguez to call for them, either with spoken suggestions or body cues. Soon, I found I was capable of performing those adornments whenever appropriate, of being able to take advantage of the natural pauses between figures, or to cause them. My pleasure in all this was less a matter of performing the adornments but the feeling that, despite the changes in my body that had rendered it awkward and foreign to me, I had come to accept those changes and, for the most part, ignore them. On the street, I was able to walk quickly again, to stride, to rush, and best of all, to ignore the differences between what had been and what was.
Soon, Rodriguez announced he and his wife were leaving the city and moving to Saratoga, which, he told me, had become a center for ballroom dancing. Surprised by his announcement, I congratulated him on what no doubt was a well-considered move for his family. And as I dried my body and changed into street clothes, I realized I no longer needed tango.
The studio was preparing a farewell evening of ballroom and tango dancing in the Rodriguezes' honor, and he telephoned to invite me to attend. It was evident he did not expect I would since I had always refused his invitations.
"Of course," I said. "I wouldn't miss it."
The evening began with a series of performances by the studio's teachers and students, each preceded by a small speech of thanks and wishes for the Rodríguezes' future success. Toward the end of these ceremonies, Rodriguez and his wife took the floor and danced an elaborate, highly choreographed tango: for the first time I saw how serious a competitor he was, something I had never realized since I had known him only as an instructor. I left the studio shortly after his performance, well in advance of the buffet, the wine-bottles being opened and poured, and before general dancing began, stopping only to shake Rodriguez's hand and thank him for his unfailing patience, generosity, and cleverness while teaching me. At this, he put his arms around me and kissed me on both cheeks, a gesture he had never made before. I reciprocated in kind, just as one finally bids farewell to a favorite teacher or a friend.
Tango is no longer a part of my daily life. It is my husband who often notices advertisements for recitals and theatrical productions offered by touring tango companies and asks if I would care to attend, but I thank him for the suggestion and refuse, reluctant to spend an evening watching what I know will be theatrical and over-blown: tango as gymnastic, Broadway-ish exhibitions rather than a personal dialogue. Whenever I hear tango music being played, I usually ignore it, but if at that moment it speaks to me, I may take out the Yo-Yo Ma tango CD and listen as the music conjures up the steps, the figures, the adornments, while my mind dances.